Navigating Parenting, Marriage and more with MS

Category: Relationships with MS

One of the worst things about MS treatment is the fact that it has to shut down your immune system to keep your body from attacking the brain.

Due to treatments I have had an uncountable amount of colds that turned to sinus infections since 2014. I had sinus surgery in 2016, hoping that fixing my double deviated septum and small sinus pathways would reduce the frequency of sinus infections from the inflammation caused by colds. It did not, it did however make it so that I was unaware when I had a sinus infection until very far in because my face didn’t start to throb as soon as it had before as a result of all the extra space I had made.

Recently I got sick suddenly and after 3 days of high fever I finally decided to go to the doctor. By the day I went in my fever was up to 102.3 and I was seeing things. Looking back I probably should have went to the ER but I HATE the ER. I spend enough time there already and I was afraid if I went to the ER they would admit me.

Even after taking Tylenol I still had a fever when I arrived at the doctor. They did a Flu test, thinking that was a logical assumption with my comprised immune system and my symptoms. Though I do get the flu shot every year since 2006. 12 minutes later, it was not the flu. It was determined I had “communal pneumonia”.

Even after taking 2 types of antibiotics 3 times a day for 10 days I still felt terrible. My lungs no longer felt like sandpaper when I coughed but my fatigue was worse, the cough and congestion still there. Pain breathing anytime I exerted any type of effort.

Three weeks later and I am still recovering. That is the price of treating MS, everything takes longer to heal. It’s not something you can avoid when you have kids either, they have to go to school and they are constantly around other kids who may or may not be sick. They come home and you cannot decontaminate them fast enough or well enough to catch every possible thing.

So during winter I dread every sniffle and cough, is this allergies or has my child been given some terrible germ that will eventually wreak havoc on my already terrible immune system.

Hang in there, but if you have any good tips please let me know because I am so tired of getting sick!

Back in my teens and early twenties noise did not bother me. I used to listen to loud music, have the TV on in the background while I studied or wrote it was fine. Now, it makes me crazy and not in the sense that it is just annoying because I am old.

I am in my thirties, I am not sure if it’s related to my MS, Meniere’s or both as people afflicted with either complain of sensory issues. When I am trying to focus on one thing and there is noise or talking or a loud TV, music anything, I get actual nerve pain. This week I was helping my youngest son with his reading homework, he was reading aloud to me as I listened; my oldest son was talking to my husband who then came out and started asking questions. I lost my shit a little, I didn’t realize I was yelling in response until my husband said something, all I knew was that I was trying to focus my attention on one thing and then I was overwhelmed with sound.

For people who don’t have this issue think nails grating on a chalkboard (though that sound doesn’t bother me, probably from nerve damage in my ears), in addition to the feeling of that sound think of something that gives you uncontrollable shivers down your spine and go ahead and throw in some heart racing chest pain inducing feeling. I can’t speak for all people with sensory issues, but that is what it feels like to me. It’s terrible, when it’s happening I just want it to stop, but you cannot control the sound of everything around you if there are other people involved.

My therapist is always telling me to take deep breaths, mostly when stress hits me or my PTSD kicks up. It is a hard thing to remember to do, especially when panic sets in because your body has decided to revolt its surroundings. This thing happens to me way more than I would like, well actually I would like it to never happen so I guess that I would like to be able to control when. If I go out to dinner with my husband, the sound can become too much, out with the kids, or play dates, social events. The problem is that it is not consistent, it’s not every single time there is sound or only when I am doing a certain thing.

If you know someone with sensory issues, take a beat, they may be snappy because their body just attacked them and they can’t handle anything else at the moment. Ask before touching, because I have even had to explain to my kids that “light” touches are actually painful to me as it sets my nerves on fire.

D.B. Woodside played the principal on Buffy the Vampire Slayer, my favorite TV series (Doctor Who being second). Not only do I own all the seasons of Buffy and Angel, but my BFF and I used to have marathons with pizza when we still lived in the same state. When my husband and I were dating we watched the entire series. Because honestly, if you don’t like Buffy I am not sure we have that much in common. :p

I recently started watching Lucifer, in which D.B. Woodside also acts in, however, I could not place him. It was driving me nuts, and instead of making the most logical step of just IMDB(ing) him and putting it together I actually pulled up IMDB and showed my husband the picture and said, “what was he in?”. To which, my lovely husband replied, “he’s the principal from Buffy” and starts chuckling.

Bah! I should have known that, and then he informed me how funny the progression has been. He told me that for years whenever I saw him I would say “It’s the principal from Buffy!”, then it was “is that the principal from Buffy?” to which he apparently frequently told me no. And NOW, I watched 2 seasons of a show with him and was like “who is this”.

My response to this was of course, now you have something concrete to measure how much my brain is impacted because I keep telling you I am losing memories. I guess my beloved principal from Buffy was the next victim of this disease in my brain.

For me my cognitive decline is the symptom I hate the most, I can nap and sit places for fatigue and balance/walking issues but there is nothing I can do to replace the memories I feel that I am losing at a rapid pace. Forgetting an actor doesn’t seem like that it would be that big of a deal, but as you can see by the photo of Buffy Villains from Comic-con 2017 I am a HUGE fan.